Living with pulmonary hypertension

Charlotte Harding finds out more about what it is like living with pulmonary hypertension.

We have all probably said that ‘life is too short’ at some point but how many of us have been spurred on to do something.

“People always say life is short but very few do anything with it,” explains Victoria Sant, conference and event sales executive at Hilton London Gatwick Airport.

“I don’t know what my prognosis is and I try not to think about it too much as I don’t want to waste my time being miserable. But I do have down days I try and keep positive and there are so many things I want to be able to do as I am only 31.”

In 2011 Victoria discovered she had autoimmune hepatitis where her body believes her liver is a foreign object and attacks it, due to this her immune system isn’t as strong as it should be.

However in 2016 she found that doing simple tasks like walking down a straight corridor and getting herself dressed made her out of breath.

“I heard something on the radio which said if you struggled to breathe doing things that you used to find easy it could be lung cancer,” she reveals.

“I had a meeting with my liver consultant and decided to mention it to him.”

It was then that Victoria was taken to hospital and seen by two doctors.

“The first said it was probably a chest infection,” she explains.

“But the second was a heart specialist and thought something wasn’t quite right and sent me for tests at Royal Brompton Hospital in London.”

Following a number of tests and ECGs it was found that Victoria had pulmonary hypertension.

“The conditions I have are very rare,” she explains.

“They also found out that I have connective tissue disease which links them both.”

Turning 30 in 2015 Victoria decided she was going to do things she had always wanted to including flying a plane, going to New York, going up in a helicopter and walking the Great Wall of China.

“I just thought I had to make the most

of it,” she says.

“I didn’t know I had pulmonary hypertension at the time so I did struggle with the wall but I just put it down to not being able to train much.

“I was meant to do the London Marathon last year for a lung and heart charity but it is just something I won’t be able to ever do.”

Her diagnosis came in October 2016 and she found the charity Pulmonary Hypertension Association website helpful in not only answering any questions she had but also her loved ones.

“When the consultant first told me it was quite a lot to take in,” reveals Victoria.

“I had so many family members asking me questions that I just couldn’t answer so I told them about the site as there was so much information out there.”

So what would Victoria say to anyone who may be getting out of breath doing the most simple of things?

“Go to your GP,” she insists.

“Some people put things like getting out of breath to being unfit. But if you catch something more serious earlier it is better as if you leave it, it keeps getting worse.

“When I went to the doctor I said ‘I think I have lung cancer’ I expected them to laugh but they just took that into consideration.

“They think I had probably had it for a while before I was diagnosed.”

She adds that pulmonary hypertension is so rare that doctors aren’t always able to see the signs and it was only because she was seen by a heart specialist that it was caught when it was.

While some things might not be as easy for Victoria she is making sure she ceases every opportunity and living her life to the full.

What is pulmonary hypertension?

PH is a rare lung and heart condition. It occurs when the walls of the pulmonary arteries thicken and become stiff or are blocked by blood clots, which makes it very difficult for them to expand and allow blood through to the lungs. This places far greater pressure than normal on the right side of the heart as it pumps the blood. It can cause extreme breathlessness, blackouts and heart disease.

From Pulmonary Hypertension Association (PHA) UK, the only charity in the UK dedicated to supporting the PH community made up of patients, their family and carers and NHS professionals too.